The Lonely Life of a Food Allergy Mom

There’s one part of every kid birthday party I hate: the food part.

It’s always pizza and cake, and usually my son doesn’t care that he can’t have any. He eats his meal before the party, and I bring his dairy-free, wheat-free, egg-free, peanut-free cupcake in a little Tupperware.

But during the last party we went to, when the pizza came out and all the kids dove in, my son lowered his head, and I heard his little voice say: “I wish I could have some food.”

And my heart broke in half.

Mason is 5 years old and off-the-charts allergic to wheat, dairy, eggs, peanuts, and tree nuts. He’s had the allergies since birth, and they were diagnosed through blood testing, so he’s never actually touched any of those foods. Which means no ice cream, no peanut butter and jelly, no pizza, no mac and cheese, no milk and cookies, no pretty much any common kids’ food you can think of—ever.

He’s my eldest, so I’ve never experienced motherhood without food allergies. Which is probably for the best.

I can only imagine how nice it must be to be able to go places without a bag full of food, because you know you can always “find something.” To show up at a birthday party with nothing but your kid and your gift (and to not stay up late the night before, whipping up another batch of those dang allergy-friendly cupcakes). To send your kid to a friend’s house for a playdate without first explaining to the mom that he probably can’t eat anything in the cupboard—but like no seriously, he could die.

To send your kid to school without Epi-pens and Benadryl and an inhaler and a carefully documented, pediatrician and school nurse approved Allergy Plan, hoping to God that the teachers remember and then diligently monitor his allergies (on top of the 4 million other things they have to remember and do) and that some innocent kid doesn’t randomly offer your kid a cookie or a piece of bread.

People say that food allergies are so common these days. Everyone who hears about Mason’s allergies has a friend or a coworker or a cousin who’s dealing with them, and every teacher I talk to is “very comfortable” dealing with them.

But still, somehow, I don’t know anyone with kids dealing with multiple food allergies. There’s no one else in our family who’s had them, going as extended as you like. And every time I tell someone new about Mason’s situation, I get the same blank, confused expression—like, you’re telling me that perfectly healthy looking kid has never had a glass of milk in his life?

It’s hard for people to understand food allergies, or to take them seriously, because how could something as harmless as a glass of milk—literally every human’s first form of sustenance—be anyone’s kryptonite? How could a kid who doesn’t look sick at all be capable of violent, potentially deadly reactions to such an innocuous thing as food?

It sounds so ridiculous that it’s almost hard for me to wrap my head around it sometimes. After 5 years of extreme vigilance and only a handful of (relatively minor) blips and subsequent reactions, even we are getting a little blasé. I almost let Mason try some fries at a restaurant recently, having no idea what was in them or how they were made, because, gosh, they’re just fried potatoes and maybe it’ll be ok??

But then I hear the stories. About a teenager who died of an anaphylactic reaction to something unexpectedly cooked in peanut oil. About a boy who died after eating at a restaurant on vacation, even though the parents had done their due diligence in discussing the meal with the chef in detail. About a toddler who died after eating something she’d eaten a million times before, thanks to an undisclosed ingredient change in a packaged food, leaving a shattered mother to beat herself up forever for her tiny mistake.

It’s hard because, as horrible and inconvenient and frustrating as food allergies are, they are not cancer. They are not a heart or brain disease. They are not countless other afflictions that might be considered “worse.”

And yet, food allergies come with the same constant, looming fear: the possibility of death. It just happens to be wrapped up in a relatively-healthy-looking package, so that people have a hard time comprehending the severity of the situation or accepting that the threat is actually there. (Which, of course, compounds the danger even more.)

For many food allergy moms, the anxiety is crippling. I’ve read about moms who homeschool because of their kids’ allergies, and who are on anxiety meds themselves just to deal with all the fear. They don’t get babysitters, they don’t go on vacations, they don’t separate from their kids in any way—because who knows what could happen, and God forbid that thing happens when Mom and Dad aren’t there.

One of the hardest parts about the whole thing is that we don’t know what could happen with any particular exposure. Maybe nothing—but maybe everything.

In our case, my son was diagnosed when he was 6 months old and still exclusively breastfeeding, so we have never purposefully fed him any of his allergens. As a baby, he would only nurse for 5 minutes at a time, and then promptly vomit most of it up. I would literally cup both of my hands under his mouth with the burp cloth, after every feeding, and wait.

My doctor smiled and assured me that “babies spit up,” and encouraged me to keep feeding “on demand.” She even managed to explain away my poor baby’s head-to-toe eczema and unrelenting cradle cap, prescribing tub after tub of Aquafor and assuring us that it would pass.

I was a brand new mom and didn’t know any different—I assumed this must be normal.

It wasn’t until we started introducing solid foods and Mason got some hives around his mouth after trying bananas—BANANAS—that our doctor suggested food allergy testing. On a scale of 0 to 100, with <5 being normal reactivity levels, Mason’s tests came back “>100”—literally unreadably high—for a dozen different foods.

I wasn’t devastated, only because I was too busy being relieved to have answers. Finally, I knew why this motherhood experience hadn’t so far been anything like the blissful, breezy experiences my friends seemed to be having. Finally, I could stop feeling like a crazy, paranoid first-time mom.

Finally, I knew how to take care of my own child.

Determined to keep breastfeeding, thinking that my poor allergy baby needed all of the “liquid gold” nutritional help he could get, I dropped those dozen foods overnight. For almost 6 months, until just shy of Mason’s first birthday, I lived on plain roasted turkey, gluten-free granola, a few select fruits…and not a lot else. I forgot food even tasted good—I just had to eat things, a few times a day, that wouldn’t make my baby sick.

It wasn’t hard. Really, none of the things I’ve had to do as an allergy mom have been, relatively speaking. I’m not scheduling surgeries for my son—I’m just swapping out peanut butter for sunflower butter, wheat bread for gluten-free brown rice bread, cow’s milk for coconut milk.

When it’s for your kid, and you know their health and life depend on it, you don’t really think about it—you just do it. After 5 years, I’m pretty used to dealing with food allergies, to the point where the day-to-day work (substituting ingredients, making two different dinners every day) is mostly automated, and it doesn’t take up that much space in my brain anymore.

But still: being a food allergy mom is lonely.

It’s really, really lonely.

It’s lonely being the only mom you know who has to bring cupcakes to parties and have extra meetings with teachers and nurses. Who drives 2 hours twice a year to take her son to a special allergist. Who can’t do “normal” things like swing through a drive-through for the kids’ dinner or take the kids out for ice cream or leave the house without a carefully scripted food plan.

I’m the only mom I know whose son constantly asks, “am I allergic to this?” Whose grocery bill is double what it would otherwise be, due to all the special everything-free alternatives in the cart.

It’s hard watching other moms navigate motherhood without the added stress of food allergies. (Because yes, of course I’m jealous—and of something most moms don’t even recognize as a blessing.) It’s hard swallowing all sorts of emotions when people say things like, “I’m so glad I don’t have to deal with that!”

It’s hard being different, in our society, in general. So on top of the fear of accidental exposure, there’s the fear of bullying and exclusion.

Oh, and then there’s the mom guilt. I’ve spent the past 5 years analyzing my pregnancy with Mason, and coming up empty handed. What did I do wrong? I took my prenatals, I ate relatively healthfully, I exercised, I avoided tuna and deli meat and alcohol and soft cheese.

Still, every time someone asks, “what do you think caused it?” I’m plunged right back into the guilt zone.

To date, we have no idea what causes food allergies. Some people have their beliefs—“it’s all the chemicals in our food” or “it’s that antibiotic hand soap” or “people are just too clean these days”—but my family eats real foods, we use all-natural products, and sure, I like a tidy house, but I’m definitely no clean freak. So why us? Why our son?

Our second son is allergy-free, lucky guy, and I haven’t spent a single second looking back on my pregnancy with him. And now that I’m pregnant with our third, I can only pray that she’ll come out allergy-free as well, for her sake.

But if she does end up with food allergies, at least Mason won’t be so alone.

Because really, most days, it’s it the loneliness that’s the hardest part.

Kim
Kim grew up in Minnesota, but moved to Madison to attend the UW and fell in love with the city’s spirit and culture. She's married with three sweet kiddos - Mason, Joshua, and Leah. When she’s not racing monster trucks across furniture or pretending to be interested in video games, she’s working on freelance writing projects or teaching strength training classes through her small fitness business, Lioness Fitness. Kim's a food allergy mom, which means she can read a food label like nobody’s business. She's also a sucker for good wine, good sushi, a good book, and ANY beach.

46 COMMENTS

  1. Your article is very good and very valuable knowledge in it.

    Your immune system produces substances known as antibodies. When you have allergies, your immune system makes antibodies that identify a particular allergen as harmful, even though it isn’t. When you come into contact with the allergen, your immune system’s reaction can inflame your skin, sinuses, airways or digestive system.

    The severity of allergies varies from person to person and can range from minor irritation to anaphylaxis — a potentially life-threatening emergency. While most allergies can’t be cured, treatments can help relieve your allergy symptoms.

    But before buying the meds from online pharmacy always consult with your doctor and there are many online drug stores on which we can buy meds for anti alcoholism, mygenericpharmacy is one of them which i have searched.

  2. Thanks so much for writing this. My two children have multiple allergies. I didn’t learn of them until we became expats working abroad in South Korea. So along with culture shock and challenging language barriers; I had to learn about allergies and management of them while residing in a foreign country where the general public is not as sensitive to food allergies compared to the US. I had to beg just to get a prescription of one Epipen. It has been an extremely lonely process for me; especially since the pool of “westerners”, like me, is very small.

    I wished I had known about the baby’s allergies prior to moving. I had my suspicions at the second month mark when 5+ hours of colicky crying every day, milk strikes (refusal of breast & bottle) were occurring, next the doc said I wasn’t changing the baby’s diaper enough because of the rashes (which was absolutely far from the truth).

    When we arrived in S.Korea my youngest was 3 months old and my oldest was 4. Through elimination dieting, while breastfeeding, I was able to see my baby’s improvements when dairy was cut out. So I found a South Korean manufactured Hypoallergenic baby formula and supplemented out of fear that breast milk wouldn’t be enough or couldn’t be sustained. (The S.Korean brand is “Maeil” Absolute HA baby formula & it smells much more pleasant than Nutramigen). The baby is 20 months now and is still drinking it today.

    After navigating the health care system here, in S.Korea, I have learned through blood tests that my youngest is allergic to peanut, egg white, dairy, wheat and garlic; the older child: walnut, dog, peanut and sesame. I learned about cross-reactions as a result of my oldest going through anaphylactic shock. The one Epipen I had begged for was used to save him.

    We have started OIT in South Korea on my youngest and she is showing progress on egg, wheat and dairy. OIT for walnuts is being incorporated now but, is a constant threat to my son. It’s stressful just having the walnuts in my cabinet knowing it could kill my son but, the Allergist here says it’s a must to keep my daughter safe in the future. My son will be starting OIT here soon too.

    As my little family’s journey through our allergy experience continues to develop, I will continue to remain vigilant. My little ones understand. The baby won’t go near playdough. My son won’t go near nuts & has started asking for a pet cat instead of a dog. My son is starting to look out for the baby too. It is a lonely process for me but, blogs like these and online communities really help. Many thanks for blogging!

  3. My food allergy group posted this. This is so true of the food allergy life. My son is 6.5 years old and allergic to dairy and soy. It is lonely. So lonely. My anxiety is on high alert all the time. I am constantly looking around for potential food products my son could react to. He is also contact reactive. The random hives we deal with is so hard at times. I just want him to be normal kid for once! My grocery bill is double what it should be. We are also a dairy and soy free home so our son has one safe place in this world. I nursed my son for 18 months. I constantly question what I did wrong while pregnant. Our allergist thought he would out grow around 5 years old. Not yet. Thank you for telling your story because this is what all food allergy moms go through everyday. We rarely attend parties(it is just too risky) and often leave story time early when the snacks come out.

  4. This is an old post but I happened to find it while looking for answers to my own anxiety. And having shared it on the Facebook food allergy moms group, so many people loved it and could relate to it. So thank you for sharing how you feel.

    I have signed up my son for a new treatment which is only offered in Long Beach, CA – so across the country we fly. Our first appointment is Monday, thus the relentless anxiety. But as you said when it comes to ensuring the safety and well being of your child, nothing is hard.

    • We’re also signed up!! Bringing me so much hope. And such a break from the loneliness. The SoCal group is amazing! Best of luck

  5. As I was reading your entry, I couldn’t help but keep saying, “yes, yes, yes…” You really captured the emotions that I believe so many food allergy moms go through. Thank you for sharing! Your post is invaluable!????

  6. I’ve never written on a message board before or replied to a post I’ve seen on any website. This is my first. This story sums up my life exactly. My son was extremely sick (rash, digestive issues) from birth and every doctor told me it was nothing. When we finally learned at four months that it was allergy I was thrilled. At least I had an answer and knew the cause. It soon became clear how lonely and difficult allergy life is. It can’t be described with mere words and absolutely no one – not even the most involved and loving grandmother – can fully comprehend the burden we bear and the immense responsibility we have. Thank you for putting my experience into words. It is beyond comforting to know that I am not alone in this and that others like me exist.

    We are starting a form of OIT with my son in the coming months. It’s called TIP and in Long Beach CA. We will be flying from NY. Look it up if you’re interested. Much more effective than traditional OIT.

    And I’m here if you ever want to talk! I know I do. Xo

  7. Great job capturing how so many parents feel. It helps so much to be reminded that we are not alone. And to hear from other people who have experienced almost the exact same thing

  8. Wow I started to tear up when I read this because I feel like I could have written the exact same story to the tee. Old was diagnosed with the exact same food allergies at 6 months after exclusively breastfeeding, and 6 months of torture as I watched my baby cry, spit up everytime she fed and fuss the remainder of the day. And the doctors thinking you’re an overreactive mom. And other parents or teachers treating you like a hypersensitive parent who is just trying to be difficult when asking for special accommodations.
    Thank you for writing this. It is interesting thst as “common” as it’s becoming, there seem to be few people around to relate.

  9. You are NOT alone Kim! Like 40% of all other kiddos with food allergy diagnoses, my eldest is not allergic to 1 of the top 8, but 3 of them. Between Vegenaise (for tuna fish) and Sun butter (with jelly, of course) I make lunch for school work but with an egg allergy there’s always the pain/guilt associated with not being able to eat cake at their friends’ birthday parties. I personally do my best to bring more awareness to the issue for example when it’s our turn to host a birthday party by requesting info about food allergies/sensitivities (such as gluten) with everyone’s RSVP so that I can make sure that all friends can share the same kind of treat TOGETHER.

  10. I’ve never written in response to a blog post but this is comforting. We have a 10 month old with an almost identical story. First time mom, thought all the eczema was normal, etc. Turns out he has milk, egg, wheat, banana, avocado, green pea, tree nuts, beef, bison, chicken, turkey, Venison, pork, pumpkin, squash, Apple, and latex. Right now, he’s eating coconut yogurt, rice, and beans. It’s comforting to know that your Mason, is 5 and you’re making it, because it’s a struggle for me currently. Every food introduction, I could harm him, not knowing if he’ll be allergic or not. It’s such a lonely road and I’m struggling with finding anything for him to eat.

LEAVE A REPLY

Please enter your comment!
Please enter your name here